Pages

Monday, September 17, 2012

There is something called Buddy
Walk. It is a program that was established in 1995 by National Down
Syndrome Society (NDSS) to promote acceptance and inclusion of people with down
syndrome and to celebrate down syndrome awareness month in October. The name
itself signifies inclusion between friends of every ability – buddy walk. The Buddy Walk is
now in its eighteenth year. What started in 1995 as
17 walks has grown to more than 250 walks across the country
and around the world. Last year alone, 285,000 people participated in
a Buddy Walk and collectively they raised over $11 million to
benefit local programs and services and NDSS national advocacy
initiatives. The Buddy Walk is a one-mile walk in
which anyone can participate without special training. It is an inspirational
and educational event that celebrates the many abilities and accomplishments of
people with Down syndrome. A buddy walk will happen in the Greater Seattle
area on October 7th. You can find more details about this walk here. Samaira, Siddharth and I
will be there. I have let our friends, family and relatives know of this event
and some of them have decided to join us in the walk.

While we haven’t seen the “exclusion” side of the special needs world yet, I value “inclusion.” We
are happy to live in our own bubble of friends and family who love us and have
showered us with nothing but positive emotions and vibes. We have felt nothing but inclusion so
far. While I hope this continues to be the case for the rest of our lives, there
may be exceptions on the way. And for that, I am not ready.

I still remember first reactions of some of my people. I remember the
first thing that my brother told me was “It doesn’t matter what the next few
days look like, I know Samaira will have a good life. She will be happy.” While what my brother said didn’t matter back then because I was so consumed in the immediate impact of the diagnosis, it matters now. It is the most important thing today. I remember my
Dad’s first reaction was “We don’t care what the
doctors have to say. We love her.” I remember a few of our friends & family who visited us every single day at the hospital right after Samaira’s birth.
They saw us from day 1 when Samaira was just a few hours old, to day 2 when we
learnt about her diagnosis, to day 3 when all I could do was cry when alone, to
day 5 when I wasn’t crying every 5 minutes anymore, to day 15, to day 30(ish)
when we finally got discharged. None of my friends cried in front of me, but I know
some of them did cry. The tears were more for the uncertainty that awaited us, for
the change in path there was. Little did I know then that even on this
alternate path I will meet other travelers, make some everlasting friends, see trees
& their shadows, see sun glistening through those trees, face hurdles on the
way, and gather the strength to overcome those hurdles. Essentially, experience similar content as I had expected, just packaged differently. I am not sure if
any of this makes sense, but this is how my brain has been processing my
experiences these days.

9 months later, I know so much more than I did on day 1. I know we are
on a slightly different learning path, but boy is it fun. We haven’t seen any
other way and this is the only way to be. And it is amazing. Now, I can’t
imagine things playing out any other way. Our little cuddly-smiley package
turned 9 months today. She hasn’t been well for the last few days but that doesn’t
stop her from smiling every so often. I wonder where she gets so
much strength from. As creepy as it sounds, I spent several minutes just
watching Samaira sleep today. I couldn’t help but admire her beautiful face – her perfect
almond shaped eyes, perfect thin lips and perfect little nose. I even caught
her smiling a few times in her sleep. I could watch her sleep all day, every day. In
fact I could take that up as a full time job.

All our friends can vouch for
what a peaceful child Samaira is, but she definitely has her phases. There are
times when she doesn’t want to be left on the ground even for a few seconds. There
are times when she is super cranky and irritated, while we struggle to decipher
her code for cry. It becomes more challenging during the days that Siddharth is not in
town – his new job demands traveling outside of Seattle. Those days that I am
home alone with Samaira are fun & tiring all at the same time. I now have a new found respect for single parents. I don’t know how they do
everything from getting up in the morning, to feeding the baby, to getting
ready, to getting the baby ready, to getting to day care, getting to work,
coming back home, feeding the baby, entertaining/playing with the baby, putting them to sleep, and then prepare for the next day.

All said and done though, I am still in the honeymoon phase of my brand new baby and am celebrating her monthly birthdays.

Wednesday, September 5, 2012

Out of absolutely nowhere, I had a lightening like dramatic feeling
inside of me this morning. It was a feeling of extreme exhilaration because I
am a mom and I have a baby, a realization that I am very lucky to have a child
in my life, a sensation that every day is a lot more brighter because I have
Samaira in my life, an emotion that can quickly be lost in the hectic, messy,
unpredictable, crazy, not-boring-for-sure nature of my everyday parent-life!
While I try to remind myself of the goodness every time I can, and while a
simple yet unaware smile from Samaira can turn my frowny brows to much better
crescent shaped brows – I am not always that positive. I get lost in the
routine and lose the essence of why I am doing everything I am.

Oh, well.

I have changed after Samaira’s birth, somewhat. But I cannot articulate
exactly in what way. I could try. I now know what it means to love someone more
than myself. Samaira made me love love more than I knew I could. She has made
me realize what it means to put someone else - their happiness, their interests
- before my own. I have always been high on love and I have always loved with
all of my self. But loving Samaira, while exhilarating, is a little hurtful –
more than all the previous times put together. It is hurtful because her joys
are my joys, her victories are my victories, and her pain is my pain. I feel
more vulnerable because she is someone who can touch me like no one has ever been
able to. Ever. While that defines love in general, there is something inimitable
about a parent-child love. There is a greater sense of responsibility and
attachment. There is a heightened need to ensure nothing ever goes wrong. There
is fierce desire to do whatever it takes to remove the hurdles, or better yet, prevent
them from occurring altogether. Knowing very well that all of what I want to
prevent is inevitable.

When I look around me, I see other parents, going through very similar
emotions. There is a sort of universal feel to this sentiment, this love. When
a child gets hurt, it is the parents who suffer, just as much if not more. When
a child is in pain, it is the parents who agonize. When a child is not well, it
is the parents who struggle. And when a child succeeds, parents enjoy it as
their victory. I now have a greater ability to relate to and empathize with
other parents. Even though I may not understand everything parents do, I don’t
judge. People do what they think is best for their kids, in the best way
possible. The sentiment that drives us all is love. A whole lot of it.

When Siddharth and I greeted down syndrome in our lives, we did not
know what we were up against. There was a lot of fear, pain, anger, angst, uncertainty,
unknowns, and just a bunch of unexpectedness. It has been almost 8.5 months
since Samaira’s birth. While those feelings still prevail to some extent, there
is a greater sense of acceptance in me. No thanks to me. This acceptance has
been driven primarily by Samaira. It is her eyes, her touch, her smile, her
voice, her emotions, her presence, her ponytail, her baby-toes, her tiny fingers,
her pretty much everything that has driven me to absolute acceptance. I have
come to see Samaira for who she is. On a per-hour basis, down syndrome does not
occupy my mind. On a per-day basis, it still does. I remember writing some time
back about not understanding the feeling of won’t-change-a-thing, because I would
have wanted to change her chromosome count if I could. Today, I understand that
feeling. I wouldn’t change a thing in Samaira. The reason I say that is because
she really is amazing the way she is. Every ounce of her. Changing her
chromosome means changing her genes, her protein structure, her cell
composition in a way that she will change to be a different person. Really, a
different person. And I truly love the person she is. I don’t want that person
to change. And for that, I wouldn’t-change-a-thing in her.

That said, I know it is not a perfect world. I know everything I wish
for won’t come true. I know the best I can do is prepare my baby to live in
this world, to fight for what is right, to accept, to live, to love. And all I
can hope for is a chance for my baby, opportunities for her, people in her
lives who value & accept her for who she is. Samaira is a lucky girl. Her
birth made us realize how blessed we are to have absolutely wonderful people in
our lives. We have learnt that our friends, family and relatives are our
biggest strength. We have seen them love Samaira for who she is, every minute
of the way. And for that, I am thankful. I have come to realize that the most
important role I will ever play is that of a mom, and I am thankful I got a
chance to be one.

With so much goodness and love around me, I want to focus on what is truly
important. Health. Heart. Honesty. Happy. My People – people I love.